A letter to Mum

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By Anne-Marie Heeney | Tuesday 03 May 2016

23-year-old Anne-Marie lives with her mum, Bernadette, who has frontotemporal dementia. She helps care for her, as she slowly loses the ability to communicate, carry out everyday tasks and even recognise her family. Here, Anne-Marie tells her mum what she wishes she could. If only she understood.

I found a pile of your lists, Mum. They’re all from the same Christmas period. One list just states the presents and who they were for. Another details who they would be from (for when you wrote the gift tags), and where you were keeping them. A third list helped you keep track of which ones you’d wrapped.

Bernadette Heeney in 2011

Bernadette Heeney in 2011

There are also lists for Christmas cards (one for ‘written’ and another for ‘delivered’) and one for what presents we’d got from other people so we could write thank you cards.

Your list writing used to drive us mad. Those little post-it notes were everywhere in the house, the car, your handbag.

But seeing them now, I smile. You haven’t written a list for a long time and I can’t describe how much it means to just see your handwriting again.

You’re sitting next to me now, watching me type. You look almost the same as you always did. But you – the whole ‘you’ who wrote all those lists, talked for hours on the phone, and ate a slice of lemon drizzle cake with her Irish coffee every evening – you haven’t been here for a long time.

It took us a while to realise. You started being late for work, repeating yourself, driving erratically. You once called me four times in 20 minutes to tell me that you’d put the washing machine on. (I’m sorry for shouting at you in that last call – I had university work coming out of my ears and I realise now that you weren’t ignoring what I was saying, you genuinely couldn’t remember calling me.)

You were diagnosed in March 2013, a few weeks after your 50th birthday, with frontotemporal dementia.

It’s been hard to get used to, taking you to the bathroom, getting you dressed, keeping an eye on you while you eat. It hurt when we noticed you’d stopped talking completely.

It’s cruel and unfair that you’re being taken away from us, a little more every day, especially because it feels like we barely had a chance to get to know you properly. There are so many questions I wish I could ask you, so many things I’d like to know about your life and that I want you to know about mine. The chance to have those conversations has been taken away from us.

Anne-Marie, her sister Olivia and their mum in 2014

Anne-Marie, her sister Olivia and their mum in 2014

But we’re making sure we enjoy all the time we have together. We haven’t let dementia stop you or us from having a good life: we just have to take extra time planning everything. We’ve been to Florida, New York and Washington, and you go to Ireland a few times a year. You walk to the shops every day, go for meals with your friends; you eat more chocolate éclairs than you probably should. You saw me graduate, you were at Olivia’s 18th birthday, and you and Dad celebrated your 25th wedding anniversary last year.

Dementia might stop you enjoying or appreciating those moments as much as you should. It can stop your smile being as bright and full as it used to be. It can stop you writing lists, making yourself a coffee, using the phone. It can even stop you recognising us, your husband and daughters.

But dementia can’t stop us helping you to enjoy your life while we still can.

You see, dementia can’t change the fact that we love you, and that we are so lucky to have been loved by you in return. That’s what keeps us smiling.

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About the author

Anne-Marie Heeney

Anne-Marie Heeney is a 23-year-old student from Birmingham. She is currently doing a Masters in English Literature and waitresses in her spare time, while also helping to care for her mum Bernadette, who has early-onset frontotemporal dementia. She was diagnosed when she was 50. Although it is very rare, this kind of dementia is genetic in Anne-Marie’s family.